Being a parent to a child with a disability can be a very humbling experience.
Last year about this time, one of my biggest worries was getting Lily set up in a “big girl” bedroom before our new baby arrived in April. We hit road block after road block getting this seemingly simple task accomplished. My plan was to move the guest room to the basement, move Lily into the old guest room, and then do a few tweaks to the nursery. However, our septic system backed up into the basement (twice), putting a massive wrinkle into step one of my plan. Because I couldn’t move the guest room until the basement was fixed, I spent way too much time contemplating what type of furniture to buy for Lily’s new room. The bed choice was especially challenging for me.
Because of my frugal-leaning tendencies, I am not generally a fan of toddler beds. Why should I spend money on a bed that will only last a couple years? Going into the decision, I was biased toward finding a bed that would grow with Lily throughout her childhood.
At first, I thought a trundle bed was a perfect solution. She could sleep on the trundle at first, and then as she got taller, could sleep in the main bed. It would also give us extra space for out of town guests and sleepovers. Theoretically, it made sense. Practically, the idea fell flat as soon as I saw a trundle bed in person. In order to fit a trundle underneath, the beds are TALL. Lily is small for her age, and will likely never get above 5 feet. Throw paralyzed feet and reduced strength into the mix, and we dropped that idea like a hot poker.
We shopped. And shopped. And shopped.
Eventually, we found ourselves in Ikea and saw what I believed to be the perfect bed: a day bed with a high back and sides, and open in the front. I
t also converts to a king sized bed without adding height like a typical trundle, AND has storage underneath. I thought the high sides were great for now (give her some security after moving out of the crib), and for later (give her something to hold on to when getting into and out of bed).
I went back and forth between buying her the Ikea day bed and delaying a bed choice by simply putting a mattress on the floor. For the long term, the Ikea bed felt like the best choice. It also felt a heck of a lot more special than a mattress on the ground.
We bought the bed.
She takes pride in the fact that she has a big girl bed. Her stuffed animals line the sides like her own personal squishy army, and she uses the tall back to pull herself up so she can look at the Doc McStuffins characters on the wall above the bed. In some ways, you could say the purchase was a success.
However, it’s now a year later, and seeds of doubt increasingly pepper my thoughts because I took my eye off the ball. I forgot about giving her the greatest gift of all: Independence.
You can’t hit a home run if the bat is too heavy for you to hold, and Lily can’t achieve independence when we put unnecessary obstacles in her way. I bought her a bed that essentially traps her in a dependent role. CRAP.
I’ve spent the last few weeks wracking my brain for a solution. Steps? A ramp? A slide to make it fun? How do others do it? I posed this question to my good friend who is an Occupational Therapist, and you know what she said? People simply put the mattress on the floor to maximize independence. Why didn’t I ask her this question a year ago?!?
I wish I could go back in time. “Focus on independence!” I’d tell myself. Put that mattress on the floor and find a way to make it feel special!
Instead, I went back to Ikea and bought a step stool. On the positive side, she got into bed on her own last night. The negative: she can’t do it without her braces and shoes on, and she does not wear them to bed. Sigh. At least the step stool will be helpful in the bathroom.
I still don’t know what our next step will be. Right now I have a lot of ideas and no clear answers. I could put the mattress on the floor and erect a fort above it so it feels special, but what do I do with this darn bed? I could build a decorative ramp that matches the style of her bed and has a dollhouse built into the underside. That would be cool, but where am I going to get the tools and skills to do something like that?
Maybe I should pause and ask myself why my ideas are never simple or easy to execute…
All I know is that I’m done beating myself up over missing the mark. I wallowed in my misstep on Sunday and it didn’t do me any good, so now I’m simply going to choose to accept my mistake and move on. Dream big! Focus on overcoming the challenge at hand. Maybe it will turn out to be a fun adventure.
Still doing this with my teen daughter. Had two potential solutions for college. Either she would live at home for a year and “trial” community college or move into an apartment close by and work or volunteer while she acquired independent living skills and personal health care management. These both sounded like great options to me and we had discussed it at length with her, waiting for more maturity to see which solution was best. Then I spoke with the vocational specialist at Children’s. Her first question to me, “And what will she do for a social life?” BAM! Stopped me in my tracks. So now, although several adults I know tried college life on campus, and failed, mostly because of executive function disorder, we will add this to our list of options and try to figure out how to make this the right solution for Maria to maximize her independence. If anyone has suggestions, I am open.
I hate when I post without re-reading. I regret the use of the word “failed” in reference to others attempts at college, and wish to insert “did not have immediate success”. As many typical college students do, some have gone on to work without a degree and others took a slower approach and have done very well on a second try.
I love the restatement of “failed” – I am going to consider my bed choice for Lily as “did not have immediate success.”
My sugestion as a special ed teacher would be find a way to teach her to get in and out of the bed independently. This is a skill that can be generalized and used when she wants to climb onto other beds or couches. Is she tall enough to sit on the side of the bed when standing with her walker if so than her walker might be a good tool for her to use. If not maybe put something beside the bed that she could climb onto from the floor (such as a couch cousion) and then climb into the bed from that. Good luck
Great suggestions! She is finally tall enough to use her walker to hop up, and she’s also grown enough to climb in without a step stool. Over time she was able to figure out how to use the step stool to get in the bed as well, which was good. The challenge we are having now is that she won’t get out of bed on her own even though she can. She waits for us to tell her it is OK to get out of bed, and waits for us to be in the room with her. It sounds crazy, but I’d love to have her get out of bed in the morning to come wake us up if she is awake before we are. We have a monitor, but she just lays there quietly until we come to her.
In regards to getting in and out of the bed. It sounds like she is growing up and making great progress. As for getting out of bed in the morning. If you truly want her to get out of bed on her own and come into your room then make it a game. Practice getting out of bed and coming to your room during the day as a game have her tickle or surprise some one who is laying in your bed or sneak in and pretend to wake them up then once she is confortable with doing this independently, at bedtime give her permission to come in to your room when she wakes up in the morning. Although this comes with a warning… Once you teach this skill you can’t unteach it. Right now she is safely in her bed until you tell her she can get up. Once you teach her to get out of bed on her own expect visits in the middle of the night or her getting up to play when she should be sleeping. Good luck
Have you seen the direction Starfire is moving? They are doing moving away form the day program and group outings, and towards 1:1 mentoring with someone who gets the person with disabilities involved in groups related to their passion area to help them develop a social network of their own. I wonder if a similar type of situation could work for college? Not sure how it would work exactly, but remind me to tell you more about the Starfire short film that was at ReelAbilities Closing Night.
Amy-I have this saying from my adopted grandfather that hangs on my bathroom mirror. They printed it out and gave it to us at his funeral. It will ring true for you too I am sure.
Do what you can, when you can, where you can, how you can, as best as you can.
You can do no more. You should do no less.
I love and respect that you are doing all you can the best you can. Teaching your kids to do their best and then adjust as they learn is going to be a great gift from you to them. Nobody is perfect -especially the first time we try something.
Keep on keeping on –and dreaming big. You are an inspiration to your kids and all of us! ((HUGS))
Love that quote!
Diane-I am totally stealing your “failed” statement and posting on Facebook-such an insightful change-and words that make a huge difference! Thanks!